Post-Op Days 18 and 19

Hi! Yesterday (pod 18) was a good day. She was awake for a few minutes and it was wonderful to see her and interact with her again. I should've blogged yesterday, when I was happier.

Life as a special needs parent is an emotional roller coaster. The highs are so high. But the lows, well, they are so very low.  Sometimes, you can experience both within days, hours or even minutes. Trust me when I say it is not fun like a real roller coaster. 

Saturday night was when she first opened her eyes. I can't remember when they stopped the paralytic. But, they have to maintain the sedation to keep her from waking up too much.

She signed "TV" and somehow, she managed to say "wet" to Tom. I have no idea how he understood her. She has two tubes in her trachea, and one of them has an inflated balloon to fill any remaining gaps in her trachea to prevent air leaks. Regardless, it made us look around for what she could be talking about, and we found that her feeding tube came open, and formula had leaked in her bed. Seriously, that is incredible.

The next day, Sunday, she was awake a few times throughout the day. Here are the amazing things she did:

• Helped her nurses change her diaper by communicating that it was wet, and by trying to lift her hips up during changes. She also would lift her arm when they needed to access her lines, or when they needed to untangle/change them. They kept on exclaiming how helpful she was. And this is while she is on sedation and a bunch of other meds. 
• She answered a lot of yes/no questions. 
• Someone came to look at her eyes and she was cooperative with her. I'm not sure why her eyes are still so swollen. But, I hope they start to show some improvement soon. 
• She nodded yes, that she wanted us to put on a movie. And then we called out the options until she nodded yes again. 
• She cried when we mentioned Mabel. She clearly misses her.
• She signed "I love you" and smiled for a couple of pictures. 

I just can't tell you how incredibly wonderful it was to see her and her amazing personality again. For a little while, I started to feel like somehow, one day, everything was going to be okay.

Then today happened. Nothing major. She was asleep all day, except for brief moments when she communicated that she was wet and she signed "hurt" and pointed to her tummy.  She shook her head no, when asked if she wanted us to start a movie. She signed that she loved me.

But, it was just a harder day in general. She didn't have that same spunk. Which is totally understandable. She was probably exhausted from yesterday.  And I heard today that they are planning on taking out the ET tube from her stoma, and replacing it with a stock trach on Friday. Since they don't expect to have a custom trach in by then, the plan is to secure the trach by suturing it directly to her skin. 

Maybe it was the thought of that, that made my stomach hurt. Maybe it was just the utter fear that maybe things won't be okay. I don't know. But that's when the low of lows happened.

I don't see how they are going to be able to attach a ventilator to a trach that is sutured to her skin, without hurting her skin. Maybe they have a plan for that.

Maybe that's a lot of my issue right now. I am experienced in trach care. And I can't visualize the next step, or the step after that, or the step after that. That is excruciatingly difficult to live with, and be patient while they figure it out. And we can't even think about going home until she has an airway we can safely manage at home.

Normally, I am really good at finding the positives on my own and accepting whatever changes in challenges we've been dealt. But, I'm having a really hard time doing that right now. I want so much more for her than what is happening right now.

I look at her and can't help but think we've asked too much of her. It just isn't right.

Okay, I need to wrap this up. It is late. Oh! I received a puzzle over the weekend. I have no idea who sent it to me. But, I started it yesterday and finished it today.

It was a good one. Thank you!!!

Thank you for all your continued support and love. I really do appreciate it so much.

Much love,
Christy xo